The pediatrician’s generic “How To Introduce Your Baby To Solid Foods” pamphlet told me not to worry if my child spits out all the food on first try. So, at Fiona’s 7- or 8-month mark, I readied her for her first spoonfuls of pureed sweet potatoes, and predictably, she thrust the bulk of it out of her mouth and onto her chin, giving herself a rocking orange goatee.
I reported this to a friend and I explained with relief that apparently “typically developing kids” push first bites of food out of their mouth too, that Fiona’s refusal to swallow was not necessarily a sign of “oral defensiveness,” not necessarily a warning of g-tubes to come, which many of Fiona’s WHS peers need for nutrition. I was relieved to know that all kids could have some rough patches with the complex consistencies of watered-down, blended veggies. And my friend, well-meaning and kind, said, “I guess you can chalk that one up on the normal spectrum!”
She said it cheerfully. But I cringed at it: the word normal.
This was a few months into Fiona’s diagnosis. I might have been a little sensitive. I’d already had the brilliant appointment with the geneticist who used all the right words. Words that made me feel that Fiona’s lot in life was not abnormal. Just different. Words like “genetic deletion,” which were descriptive and accurate, rather than “genetic defect,” which was evaluative and crude. Words like “cognitive disability,” which seemed surmountable and elicited compassion, rather than “mentally retarded,” which seemed to drop Fiona into a cardboard box, tape it up, and label it “Outcast” in Sharpie marker. After that meeting, I became astutely aware of the language surrounding Fiona, and of the power that language had over anyone who used and heard it. Especially me.
Weeks later, I talked with this same friend about another, not-so-positive doctor’s appointment, and then mentioned how there were some words that made Fiona’s situation feel manageable to me, and other words that didn’t. “There should be like a glossary,” I told her. “For doctors to read.”
“I’ll take that glossary, please,” she said, and then laughed nervously, which made me realize—maybe she knew she didn’t always have the “right” words for Fiona’s situation. After all, the territory of disability was new to her, and new to my many of my friends and family members, and new to me too, at least in this personal, intimate way. And while I was getting this daily crash course in disability perspective, others were not. Others might want some guidance on what helps and what hurts.
Thus! I present to you!
The Partial Glossary of Words Not To Use With a New Mom of a Special Needs Baby
Defective—Broken. A glitch in the gizmo. A gadget gone in the trash. An Out-Of-Order sign scotch taped to the vending machine. Something you curse and kick or kick out because it was meant to serve your coffee-drinking, lawn-mowing, smoothie-making needs and now it’s defective and now what will you do.
As in when this Slate.com article mentions “the burden of raising a gravely defective newborn.”
Synonyms: Imperfect, Flawed, Malfunctioning.
Alternatives: Disabled, Challenged, Different
Disorder—Chaos. Mayhem. The alphabet rearranged. Atoms disobeying the rules. Collisions. Catastrophe. Oh, I’m so sorry. A misfortune. The stars have fallen. The sky has fallen. The world is not as it should be.
As in, disease, disaster. Dis her. As in, “Her disorder keeps her from holding her head up.”
Alternative: See Condition (Appendix).
Retarded—Backward. Stunted. Slow. The herb in your garden that just won’t grow.
As in, “Retarded cuz you can’t swing the bat, cuz your face should say woof, cuz you eat chalk from the tray, clay from the can, cuz you know why you are. Am not, are to. I’m rubber and you’re glue…” As in, “What are you? Retarded?” As in, “Rosa’s Law Asks Senate to End Term ‘Mentally Retarded.'” As in, “A doctor and social worker told [the family] that [their daughter] would not qualify for a transplant because she is ‘mentally retarded.’” (USA Today, January 2012)
Alternative: Delayed; Person with Cognitive Disabilities; Person with Intellectual Disabilities.
Appendix: Alternatives to the Partial Glossary of Words Not To Use with a New Mother of a Special Needs Baby
The state of her being: asleep in the cradle, arms cast above her head, eyes crescent slivers closed to the world of cars and commentary, little hiss of breath from nostrils the size of peas. A paused pendulum on the clock, holding this second of just is. Of is-ness. Take this. It is, her being, just fine.
How about you? Any words you prefer or wish to ban?